THE BLOG
10/20/2014 12:19 pm ET Updated Dec 20, 2014

The Unbearable Itch of Motherhood: Surviving Cholestasis of Pregnancy

John D. and Catherine T. MacArthur Foundation

By Sarah Ruhl, a Tony-nominated playwright and contributor to the Seleni Institute, a nonprofit mental health and wellness center for women and mothers in New York City.

When I was pregnant with twins, around week 25, I started to itch. This was no casual itch. It started in my hands and feet in the afternoon and spread over my whole body by nightfall. I scratched until I bled. I applied lotion. I put on a humidifier. I scratched. I took Benadryl. I scratched. I rubbed ice on my body. At 2 a.m., I took a cold bath. As soon as I got out of the bath, I itched. I wrapped myself in cold, wet towels.

My doctor told me that sometimes pregnant women get itchy. It's normal. That seemed like a banal description of my experience, so I scoured the Internet, eventually finding a website called itchymoms.com. There I learned about a condition called cholestasis of the liver, in which bile leaks into your bloodstream, slowly poisoning your blood and causing a terrible itch. More important, it can immediately kill babies.

I went to see my doctor. He assured me I did not have cholestasis of the liver. "It's very rare," he said. "But I have all the symptoms," I said. "How do you know?" he asked. "Itchymoms.com," I said.

Doctors are not terribly interested in the online research of anxious patients, or in websites like itchymoms.com, but he said he would do a blood test to reassure me. It took a week for the results to come back. In the meantime, I itched. I went to a hypnotist. For a wonderful hour, he convinced me that I did not itch. The hour was up. I itched.

A week later, my test came back, positive for cholestasis of the liver. Now, rather than seeing the tolerant, kindly faces of doctors indulging their anxious patient, I saw the stern and compassionate faces of doctors trying to make life and death decisions.

"Every three days, we will do an ultrasound to make sure there is still fetal movement," they said. "We cannot promise that in the intervening days the fetuses will not expire." (I believe at this point they changed their language from "babies" to "fetuses.") They made sure I knew that they could make me no promises about the safety of the babies while trying vaguely to reassure me that everything would be all right.

Every four days I would struggle into a taxi with my large belly to see the maternal-fetal medicine specialists and find out if the babies had died inside of me. My great-aunt Laura delivered stillborn twins in Iowa in the 1950s, and I knew that cholestasis of the liver is genetic.

Every four days we did an ultrasound, and my heart would stop until I saw the babies moving. If they were sleeping, the doctors would tap on my belly to wake them up. Baby B moved more than baby A. I could feel baby A's fingers move gently across my belly. Baby B made more global movements. The doctors reminded me if I stopped feeling the babies moving, I should go straight to labor and delivery.

Two days before I reached 36 weeks, my bile levels rose. I called the doctor in the middle of the night as I was sitting on the bathroom floor, wrapped in cold, wet sheets and fearing that the worsening symptoms meant that the increased bile in my bloodstream was poisoning the babies. I was in a circle of hell reserved for pregnant women.

The doctor said they would do an amniocentesis to see if the babies' lungs were developed enough to justify early delivery. The doctor put a large needle in baby B, my girl. Girls' lungs develop faster. The test said her lungs weren't ready. The doctors were walking a razor's edge between the mounting danger of carrying the babies in a poisoned bloodstream and delivering them too prematurely.

They gave me steroid shots, to help the babies' lungs develop. We waited.

Two days later, my doctor told me to go to the hospital. He said there were no beds in labor and delivery, so I should say I couldn't feel any fetal movement in order to get a bed. Superstitious, I longed not to say those words. But I did say them to get a bed.

When we got there, the doctor said, "How are we delivering these babies?"

"Just take them out," I said.

He said, "I'm happy to do a c-section, but baby A is positioned head down and baby B is breech. It's a perfect position for a vaginal delivery, especially since you've already had an almost 10-pound baby."

I said, "I think I'm too tired to deliver two babies. I've been on bed rest for three months."

He said, "Just push one out. I promise I'll take care of the other one. I'll pull her out by the legs."

"Okay, if you say so," I said. I was already starting to look upon this man as my savior, a superhero in scrubs.

I got my epidural. I got my Pitocin drip. We watched basketball on television. At midnight, time sped up, and they rushed us to the OR. Everyone in scrubs, just in case.

My doctor put on his birthing mix tape. I think it began with American Woman. I pushed William out while looking into the face of my husband.

I heard a baby cry. "Is he all right? Is he all right?"

"Yes, he's perfect."

Then the doctor reached inside me, as he'd promised, and pulled Hope out by the legs.

"Is she all right?"

"Yes, she's perfect."

I began shaking. I delivered the placenta. I shook. My teeth chattered. They placed both babies on me. I settled. The shaking stopped. I nursed the babies, one on each side.

The hour we were supposed to leave the hospital with the babies, William choked on his own spit-up as he was lying in his bassinet. His lips turned blue, and they rushed him to the NICU.

They put him in a little plastic box and monitored his breathing. They wanted us to leave Hope overnight under a lamp because her face was yellow with jaundice. I didn't want to leave her.

But we went home without our babies. I remember the silent car ride, looking out the window.

We went home and slept a little. The phone rang. Ringing phones are not good when your children are in the NICU. I expected the call to be about William. But Hope had had a breathing episode in the night. She was rushed to the NICU.

We ran to the NICU in the ice and cold. Once there, I saw William in his little plastic box, breathing.

"Where's my other one?" I asked.

"You mean baby B?" the nurse replied.

"Yes, Hope."

"She's sicker than your boy, so she's over there."

"Sicker than? What does that mean?" I asked.

"I don't know," she said. "You'll have to ask the doctor when he rounds."

Hope was in a little plastic box, attached to monitors. I wanted to take her out, hold her, and feed her. I asked if I could move her closer to William so I could feed them both.

The nurse said, "No. We don't have enough chairs." I spent a lot of time feeling angry at the nurses for having dominion over my babies, for not knowing my children's names, and for not having chairs. The angrier I got with the nurses, the more food
I brought them so they would remember to keep my babies alive.

I brought the nurses doughnuts so they might hold the babies a little extra in the night, take them out of their plastic boxes, say their names.

Just now, as I was writing that sentence in my office, William and Hope ran in.

Hope said, "William, I had a question, did you draw these drawings?"

William said, "Yes."

Anna, our older daughter, walked in. "I'm starved," she said. "Can I have something to eat?"

William said, "I'm starved too."

So, you see, I survived cholestasis. They survived the NICU. And now, I need to go make lunch.

This essay, which was published on the Seleni Institute website and is reprinted here with permission, is adapted from The four humours, an essay in four parts, in the book 100 Essays I Don't Have Time to Write: On Umbrellas, Sword Fights, Parades and Dogs, Fire Alarms, Children, and Theater by Sarah Ruhl, published in September 2014 by Gaber and Gaber, Inc., an affiliate of Farrar, Straus and Giroux LLC Copyright © 2014 by Sarah Ruhl. All rights reserved.

For more information about cholestasis during pregnancy, visit ICP Support.

Seleni is a nonprofit mental health and wellness center providing clinical services, research funding, and online information and support for women and mothers.